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Help?

About a month ago i was told i had CIS. Last weekend i moved which meant i had to register with a new health board. Since i have moved here i have been in touch with both an ms nurse and the local ms branch for my area. They were both concerned that the drs down the road had given me miss information on what help was available after my move (i was informed that my nearest hospital wouldn’t be able to offer me an MRI in 6 months time as they no longer have a nuro which i was informed by the ms nurse who works that the hospital they have another two there as well as been informed that the only service near me was a drop in centre which is not the case as there is so much more).Over the last week things have been getting worse so i asked for a dr to call me back. When he phoned i had to explain what CIS was and how it was related to ms and even had to explain what ms is!

Has anyone experienced this as well? Is there a better way that i can access the medical help i need without having to double check that the information i have been given is correct? I am just feeling so frustrated today with it all.

Hi Danni,

I’m sorry you feel messed about, but to be honest, I wouldn’t expect one NHS Trust (or whatever it is they’re called these days) to have detailed knowledge about what’s on offer at a neighbouring one.

In any case, it seems the facilities where you’ve moved to are actually better than you’d been led to expect. If it had been the other way round - you’d been told a service was there that was definitely NOT - I’d be more concerned.

I would say the normal path for access to services is through your GP. I don’t know if you are registered with one, or if the doctor who called you back was a GP, but if you’re not registered with a local practice, I think you need to do that as a priority. You might want to do a bit of research first, about whether any of them have a particular interest in neurological conditions, or have other patients with MS. I know they’re probably not going to release statistics about the latter, citing “confidentiality”, but perhaps other members at the MSS branch could tell you who they’re registered with, and whether they’re any good? Also some doctors’ surgeries do publish profiles on their websites, that show whether staff have any special interests.

It’s true that most GPs won’t have had a lot of experience of MS, but I find it hard to believe one wouldn’t even know what it is! Are you sure this person was a proper doctor? What kind of doctor? I just wonder if you’ve got put through to a totally unrelated department, and that’s why they didn’t seem to have a clue? If you weren’t formally referred, by a GP, that might at least partly explain why you didn’t get to speak to a suitable person.

If you haven’t already, I definitely think locating a decent GP is the way to go. I wouldn’t dwell on what the last lot said about the new area being wrong, as you’re not dealing with them any more anyway, and it’s not really part of their job to keep up-to-date with staff changes in other districts. Possibly the new hospital didn’t have a neuro, last they heard, so the info might have been given in good faith - but they wouldn’t be in a position to guarantee accuracy.

I hope you find a GP who sorts it all out for you. My GP doesn’t know an awful lot about MS, and does have a bit of a tendency to bounce every decision back to the hospital, which can be frustrating - but I still use her as first port of call.

Tina

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